Older Americans Act Comments

August 15, 2023

Alison Barkoff

Acting Assistant Secretary for Aging and Administrator

Administration for Community Living

Department of Health and Human Services

Attention: ACL–AA17–P

330 C Street SW

Washington, DC 20201

Re: Notice of Proposed Rulemaking: Older Americans Act Regulations, RIN Number 0985–AA17

Dear Ms. Barkoff:

I am writing on behalf of HealthHIV & The National Coalition for LGBTQ Health in response to the Notice of Proposed Rulemaking: Older Americans Act Regulations, RIN Number 0985–AA17.

As background, HealthHIV is a national non-profit working with healthcare organizations, communities, and providers to advance effective HIV, HCV, STI and LGBTQI+ health care, harm reduction and health equity through education and training, technical assistance and capacity building, advocacy, communications, and health services research and evaluation.

HealthHIV leads the HealthHCV initiative, the National Center for Health Care Capacity Building, and the National Coalition for LGBTQ Health.

The National Coalition for LGBTQ Health (“Coalition”), administered by HealthHIV, is committed to improving the health and well-being of lesbian, gay, bisexual, transgender and intersex + (LGBTQI+)  individuals through federal and local advocacy, education, and research. The Coalition strives to address the entire LGBTQI+ community, including individuals of every sexual orientation, gender, gender identity, race, ethnicity, and age regardless of disability, income, education, and geography. The Coalition is an initiative of HealthHIV, a national nonprofit focused on health equity.

In short, both champion the rights and well-being of LGBTQI+ individuals, while further emphasizing the distinctive and syndemic needs of those living with HIV. 

Summary: Aging is a path every individual walks, characterized by both physical and emotional transformations. These transitions often come with challenges, and for those in the LGBTQI+ community, these difficulties are often magnified by a history of discrimination and systemic barriers. 

The Older Americans Act (OAA), endorsed and funded by the Department of Health and Human Services’ Administration for Community Living (ACL), plays a pivotal role in meeting the needs of the LGBTQI+ community. Through the OAA, numerous programs have been initiated, ensuring that the aging LGBTQI+ populace and other marginalized groups aren’t left behind. These programs are more than just initiatives on paper; they’re lifelines that offer tangible support, enabling our constituents to navigate the twilight of their lives with the dignity, support and respect that they deserve.

That prefaced, we are encouraged by ACL’s proactive stance in recognizing and addressing the evolving needs of the aging demographic. The proposed changes accentuate the core objectives of the OAA, and we are grateful there is an emphasis on ensuring that service delivery is equitable for all. No longer is it just about providing services; it’s about ensuring these services reach everyone, especially those who’ve often been pushed to the margins.

Among the changes proposed, one particular inclusion stands out to us: the recognition of LGBTQI+ older adults and those living with HIV within ACL’s definition of groups with the most significant social need. This explicit acknowledgment is not just a governmental gesture; it’s a powerful message. It sends a clear signal that the unique challenges faced by older LGBTQI+ individuals and (Older and Aging) Persons Living with  HIV (PWH) are seen and understood. It is advocacy in action, echoed by the principles of: Nothing About Us Without Us. 

As we move forward in our review of OAA’s Notice of Proposed Rulemaking (NPRM), we remain hopeful and committed. We believe that with the combined efforts of organizations, government and the wider community, we can create an inclusive, understanding, and nurturing environment for all our aging populations.

Endorsement of Proposed Modifications and Potential Improvement Pathways

A. Advocate for LGBTQI+ Senior Citizens and PWH in Context of “Greatest Social Need”

We commend the new proposal requiring State Units on Aging (SUAs) to clearly define the term “greatest social need.” We especially appreciate the “standard expectation” that such definitions will encompass specific populations, as named. 

In the collective feedback provided to ACL’s 2022 Information Solicitation, it was underscored that seniors from the LGBTQI+ community, along with those PWH, distinctly match the criteria outlined by the Older Americans Act (OAA). The OAA identifies social needs anchored in non-economic hindrances such as physical and cognitive challenges, linguistic obstacles, and cultural, social, or geographical isolation, all of which can impair an individual’s daily living activities or reduce their capacity for independent living. This kind of isolation can intensify the challenges to independent living by exacerbating racial or ethnic disparities.

LGBTQI+ seniors face chronic disparities in income, professional prospects and retirement provisions that make them particularly susceptible to fiscal fragility. LGBTQI+ individuals, frequently without children to act as caregivers compared to their heterosexual counterparts, often turn to institutional care for support.

Some individuals choose to conceal their authentic sexual or gender identities from family due to fears of estrangement. Those with neurological disorders or diminished cognitive capacity can become further isolated as they age, deepening their dependence on external caregiving networks. ACL’s recent guidelines acknowledge the profound social isolation experienced by LGBTQI+ elders, especially PWH, given the stigmas associated with sexuality, gender identity, or HIV.

By explicitly recognizing LGBTQI+ seniors and PWH as populations with the “greatest social needs,” we posit that SUAs and AAAs will be better equipped to serve these groups, exceeding previous endeavors. Our perspective is shaped by firsthand experience, underscoring our confidence that transforming these directives into tangible actions is within reach for both SUAs and AAAs. They can assess service adequacy and impact while engaging in targeted outreach. Transition can be made more manageable through structured education, guidance, and facilitation programs.

Organizations such as HealthHIV, its Coalition, and the National Resource Center on HIV & Aging (also overseen by HealthHIV), alongside other committed partners like SAGE and other partners, stand ready to support SUAs and AAAs. Together, they can offer assistance in navigating new categorizations, delivering training modules, advisory support, and knowledge banks. These resources aim to enhance and tailor the care services available to LGBTQI+ seniors, PWH, and those who care for them.

In upcoming state aging strategies, SUAs might become compulsory elements, with regulations proposing an outline for their utilization and methods to identify individuals facing severe economic or social challenges. Along with the proper distribution of OAA funds, we champion a more detailed approach to these provisions, focusing especially on communities that ACL identifies as typically having the greatest social needs.

SUAs should explain why each particular demographic within their jurisdiction is recognized and demonstrate how their service delivery meets the needs of each identified community. This should go beyond vague promises or generic strategies without socio-cultural adaptation, and instead carefully detail how their offerings can or do indeed fulfill those needs. These clarifications should highlight SUAs’ efforts to optimally reach each prioritized demographic, a sentiment we also extend to AAAs or service providers working with SUAs or AAAs.

By providing specific guidelines, accountability measures for SUAs and AAAs will be strengthened, ensuring that LGBTQI+ seniors, PWH, and other marginalized groups are not lost within generalized service plans. Reflecting on previous experiences, we believe that states may demonstrate increased compliance more effectively and completely if presented with clearer and more delineated mandates.

B. Expansion of the “Family Caregiver” Definition

We commend ACL’s progressive approach to broadening the definition of a “family caregiver” to encompass not just marital partners, but also friends, neighbors, and other significant figures who care for the elderly. In the diverse experiences of the LGBTQI+ community, especially among older adults and those living with HIV or AIDS, it is frequently observed that they turn to friends or chosen community members for care, rather than relying on their biological families. This unique network of support, affectionately referred to as chosen family or family of choice, plays a crucial role in their lives. 

Emphasizing inclusivity in defining caregivers is essential as it mirrors the actual experiences and challenges faced by LGBTQI+ individuals. As previously outlined in the federal register, a substantial 39% of LGBTQI+ adults have already encountered rejection by their birth families, making the presence of their chosen family all the more vital for their emotional and physical well-being. By adopting this more inclusive definition, ACL, SUAs, and AAAs are not just recognizing these bonds of choice, but also ensuring that the genuine caregivers of LGBTQI+ elderly and those with HIV or AIDS are incorporated into the support systems. Such a move ensures that the services offered are tailored to uphold the values of enabling older individuals and their caregivers to lead lives filled with dignity, purpose, and autonomy in the environments that they cherish the most – their homes and local communities.

Further, this adoption of what defines a family caregiver can go a long way in truly understanding the reciprocal health outcome relationship and interconnectedness that support systems have for aging populations, especially those with complex healthcare needs and acuity, like HIV (let alone aging with HIV). By redefining and acknowledging the broader spectrum of what constitutes a family caregiver, the healthcare system can address several upstream factors that contribute to unmet medical needs. This not only ensures that more people receive the care they need but also pushes for a healthcare system that is equitable and representative of all its users.

Redefining family caregiver can substantially impact the upstream factors leading to unmet medical needs in several ways:

Enhanced Support Networks: Recognizing and incorporating a broader range of caregivers, like friends, neighbors, or chosen family, widens the support network for patients. This can increase the chances of early detection of medical issues, timely interventions, and adherence to medical advice, thus reducing unmet medical needs.

Holistic Patient-Care Approach: When the healthcare system acknowledges non-traditional caregivers, it can develop a more holistic patient-care model. Such models can consider the socio-economic challenges and advantages these unique caregiver systems might bring, potentially mitigating factors that lead to unmet medical needs.

Empowered Advocacy: Chosen families, or non-traditional caregivers, once officially recognized, can become powerful advocates for the patients they care for. Their collective voices can drive changes in policy, research priorities, and medical practice, addressing the systemic issues leading to unmet medical needs.

Equally as influential, this one act can also, more fundamentally, shape ongoing research priorities and improve resource allocation and educational awareness opportunities.

Improved Research Priorities: With a broader definition of caregivers, there may be a shift in research priorities. Understanding the importance of diverse caregiver networks might lead to research that specifically addresses the challenges and opportunities they present, filling gaps in the medical literature and addressing previously overlooked medical needs.

Resource Allocation and Education: An inclusive definition can lead to more tailored educational resources for caregivers, leading to improved patient care and reduced unmet medical needs. Resources can be designed considering the unique challenges faced by LGBTQI+ patients and their chosen families, ensuring they’re better equipped to navigate the healthcare system.

Tailored Clinical Trials: A broader understanding of family structures and support systems can lead to more comprehensive and diverse clinical trial designs. If trials consider the diverse support systems patients may have, they can develop protocols that are more inclusive and representative. This can translate to end results that cater to a broader patient demographic, addressing gaps in medical treatments or interventions.

C. Area Agency on Aging Advisory Councils and Area Plans

We also back the suggested stipulation that Area Agencies on Aging (AAAs) actively seek feedback from the public regarding their Area Plans on Aging. Moreover, we commend the recommendation to set up AAA advisory councils specifically tasked with gathering and integrating this feedback. We also ask that state health departments ensure that their state agency HIV planning bodies (HIV and Syndemic Planning Groups) and (TGA or EMA) Ryan White Program Planning Bodies or Allocative Councils memberships and stakeholder activities are part of—or are in appropriate alignment with—AAA activities; and that their State Coordinated Statement of Needs reflect the combined work.

The essence of the Older Americans Act (OAA) is to empower Area agencies, who are uniquely positioned to comprehend and cater to the local populations’ requirements. By basing their services and practices on feedback from those directly affected by such services, they will be more efficient and effective.

The Administration on Aging (ACL) has rightly pointed out that the membership of AAA advisory councils should span individuals and entities either from or servicing the AAA’s designated planning and service areas. This should especially consider those identified as experiencing high economic or social challenges. By doing so, the AAA ensures a comprehensive representation, integrating the insights of these particular communities into their planning strategies.

Furthermore, we strongly advocate for the ACL to furnish AAAs with the necessary tools, guidance, and resources. This would equip AAAs to engage adeptly with local communities, particularly when pinpointing and inviting individuals from groups with pronounced economic or social challenges to actively participate in the AAA advisory councils. We emphasize the need to prioritize the inclusion of LGBTQI+ senior citizens and PWH.

Parallel to this, our recommendations extend to the emphasized requirement for AAAs to cultivate a holistic, community-centric system. This system should champion cooperative decision-making across an array of sectors, including public, private, voluntary, faith-based, civic, and fraternal bodies. This includes trusted community figures who intimately understand the economic and social challenges faced by their peers, as well as older individuals and familial caregivers within the community. We passionately entreat the ACL to specify that AAAs should strategically seek the involvement of representatives from diverse groups that face substantial social challenges, emphasizing LGBTQI+ seniors and those battling HIV or AIDS in these collaborative frameworks.

In alignment with the ACL’s observations, Area plans dispatched to the State for ratification must pinpoint populations grappling with acute economic or social difficulties, and subsequently offer an assessment of their unaddressed needs. As proposed earlier, it’s essential for AAAs and their consultative councils to delineate within the Area plans the methodology behind the assessment of unmet needs for every recognized group. It’s crucial that these plans also elucidate the personalized service delivery strategies crafted for each demographically challenged group. This is to bypass overarching and non-specific intentions or strategies that do not resonate with the cultural and social nuances at the local level.

And, as society becomes more inclusive and diverse, it’s imperative that our care strategies, especially for older adults, reflect this diversity. Medical Nutrition Therapy (MNT) and meal services provided by Area Agencies on Aging (AAAs) hold pivotal importance, especially for populations with pronounced health or social challenges. The act of feeding isn’t just nutritional; it encompasses cultural, social, and emotional facets of well-being, particularly for older adults and those with specific medical conditions, with HIV as its prime example. 

In short, tailored MNT and meal services by AAAs are not just about feeding; they’re about acknowledging, understanding, and valuing the unique experiences and needs of every individual they serve. 

A prime, well-established example is how Chicken Soup Brigade, a program of Lifelong (Seattle, WA), effectively integrates the concept of food as medicine to enhance health outcome opportunities. As such, it is well understood that HIV Medical Nutrition Therapy (MNT) plays a crucial role in enhancing the overall health and well-being of PWH, helping to optimize their nutritional status, manage symptoms, and advances medication adherence and retention in care-all which improve health equity. The Ryan White service program, a vital safety net for these individuals, provides comprehensive HIV/AIDS care, including MNT, to those who are uninsured or underinsured. Funding mechanisms for the Ryan White program ensure that these essential services are accessible and available, bridging the gap between medical needs and financial constraints. This holistic approach addresses not just the virus but also the broader health challenges faced by those PWH, underscoring the program’s pivotal role in public health. 

In this Notice of Proposed Rulemaking context, it is important to address MNT and Healthy Aging together. 

Significance of Personalization in MNT: MNT is a specialized service that entails in-depth assessments, periodic interventions, and the creation of personalized nutrition strategies for individuals with specific health conditions or those at risk. For LGBTQI+ older adults, PWH, or any group with unique dietary needs (due to complex medical conditions, social determinant of health circumstances or other exacerbating conditions), it becomes vital that MNT is not just generic but specifically tailored. For instance, certain medications or health conditions might interact with particular foods, or cultural preferences might dictate certain dietary restrictions or inclinations.

Understanding Cultures and their Effects on Healthy Aging: Beyond just health, food plays a significant role in cultural identity. Many older adults may hail from diverse ethnic backgrounds, and their food preferences are often deeply intertwined with their cultural heritage. By acknowledging and incorporating these cultural nuances into meal services, AAAs demonstrate respect and understanding for the individual’s identity and background, leading to better acceptance and efficacy of the meal programs.

Emotional and Social Aspects: Meals are more than sustenance; they’re a communal activity that can foster social interaction and emotional well-being. Particularly for LGBTQI+ seniors or PWH who may have faced social isolation or stigma, shared meal times or personalized meal services can be an opportunity for social connection and validation. Tailoring meal services also shows these groups that their specific needs and experiences are acknowledged and valued.

Detailed Accountability: By providing a comprehensive breakdown of how meal services, especially MNT, are adapted for each population, AAAs reinforce their commitment to the well-being of every individual under their care. This detailed approach acts as an accountability measure, ensuring that services are not just being delivered, but they are being delivered with precision, care, and understanding of each beneficiary group’s unique requirements.

Avoiding Generic Approaches: A one-size-fits-all method can lead to inefficiencies and might not address the specific needs of all beneficiary groups. By emphasizing the need for tailored approaches, we ensure that AAAs do not just pay lip service with overarching statements. Instead, they are compelled to think deeply about the needs of each group, and to devise strategies that will genuinely benefit them.

D. Legal Support, Guardianship and Self-Determination

Legal support initiatives are instrumental in safeguarding older adults’ rights to autonomy, self-determination, and active involvement in shaping community-based programs tailored for them. Additionally, these programs shield them from potential abuse, neglect, and exploitation.

The NPRM to the legal assistance requirement further aligns with the mission of the OAA. These changes aim to better provide the needs of individuals facing the most significant economic or social challenges, such as LGBTQI+ older adults and PWH.

And, given the ACL’s prioritization of LGBTQI+ older adults and (Older and Aging) PWH with the most pressing social needs, we further recommend introducing specific verbiage about legal support—support that also directly addresses the unique challenges faced by PWH and transgender older adults, particularly those susceptible to guardianship. 

We have observed instances where the authentic gender identities of transgender seniors are dismissed or negated by their birth families during guardianship, which can lead to devastating emotional consequences. 

Long-term care facilities have also recently seen an alarming trend affecting LGBTQI+ seniors: pressure to conceal their identities. Though LGBTQI+ rights and acceptance have made significant strides over recent decades, many elderly care environments still practice conservative measures which may reflect outdated beliefs or prejudice. Due to these challenges, LGBTQI+ seniors often feel pressured into “going back into the closet“, suppressing their sexual or gender identities in order to protect themselves from discrimination, mistreatment, or isolation. Suppression deprives individuals of their right to authentic self-expression and can lead to significant emotional and psychological distress–and poor health outcomes. Such environments fail to recognize and respect the entirety of an individual’s life experiences and push them further into invisibility during a vulnerable phase of their (our) lives. Therefore, the necessity of providing inclusive long-term care services that affirm all residents regardless of sexuality or gender identity has never been more pressing.

It’s crucial that transgender seniors receive the acknowledgement and dignity that they deserve, being seen and respected for who they truly are, irrespective of their personal autonomy or ability to make decisions.

Guardianship reform across the country is deeply rooted in the ideals of self-determination and human dignity. Overlooking or invalidating a transgender person’s gender identity and sexual orientation flies in the face of these principles. Transgender seniors under guardianship might face discontinuation of essential gender-affirming care if their guardians fail to recognize or respect their gender identity. 

Furthermore, when housed in facilities like nursing homes or assisted living establishments, both PWH and transgender seniors could be exposed to prejudice, potential mistreatment, or even explicit disregard of their chosen family, names, or pronouns. These observations underline the pressing need for a holistic and compassionate framework to protect and champion the rights of PWH and transgender older adults facing guardianship. 

E. Client Eligibility Criteria

We also endorse ACL’s stance that SUAs, AAAs, and service providers can set additional eligibility criteria, provided they align with the OAA, its implementation regulations, and guidelines set by the Assistant Secretary for Aging. 

Given the distinct health disparities and social care challenges faced by older LGBTQI+ adults and more specifically those older and aging PWH, we suggest reconsidering the fixed eligibility age of 60 for these specific groups. 

In 2020, older persons with HIV (OPWH) represented half of all persons living with HIV in the U.S. Current estimates predict that by 2030, nearly 70% of persons with HIV in the U.S. will be over the age of 50. This demographic shift poses a unique set of challenges for HIV care providers, with tremendous implications for how we prioritize and deliver services.

HealthHIV’s Third Annual State of Aging with HIV™ National Survey was developed to gather information on the current experiences of OPWH in the U.S. We heard from nearly one thousand PWH from across the country who shared information about their personal health journey and their understanding of the most pressing needs facing adults aging with HIV. 

And despite high rates of viral suppression and engagement in care, 94% of our respondents agreed that more advocacy efforts are needed to address the needs of people aging with HIV. This reflects the increasingly complex reality of providing comprehensive care to OPWH. While medical providers are often adept at addressing HIV, there remains a significant need for enhanced training and medical education that prepares providers to develop interventions that address, not only the many comorbid conditions associated with aging with HIV, but also the pervasive and intersecting systemic barriers that face OPWH, including housing instability, gaps in social support and insurance coverage, and stigma.

Key Findings From This Report further showed that:

Multimorbidity and polypharmacy is a near-universal issue. 2 in 3 respondents reported at least two comorbidities and 3 in 4 reported taking at least two daily medications.

Mental illness is on the rise. 64% of respondents reported mental health concerns compared to less than 40% of respondents last year.

Retirement savings are minimal. Half of respondents had no financial retirement plan and 4 in 5 had not saved enough for long-term care or supportive home care.

An uncertain future looms. There was a strong sentiment among respondents that OPWH are often forgotten and left out of the conversation around HIV care.

The path toward “Health” is rarely linear for Older People with HIV. Many PWH experience multiple health issues at a much younger age compared to their non-HIV peers. Hammered by mounting obstacles—polypharmacy, multimorbidity, mental illness and increasing barriers to care—an emerging portrait of frustration and ire among OPWH is building.

As such, determining eligibility based solely on chronological age doesn’t truly capture or accurately reflect their service needs, based on primary data conducted. Therefore, ACL should think about explicitly authorizing the adoption of a reduced age threshold for older LGBTQI+ adults and acknowledging their distinct needs and conditions.

F. The Intrastate Funding Formula and Best Available Data

The requirement for State Units on Aging (SUAs) to design a funding distribution plan. This plan, called an intrastate funding formula, determines how funds will be allocated across different areas of the state. The basis for this distribution is the concentration of older adults (those aged 60 and over) who are in dire economic and social situations, with special emphasis on “low-income minority individuals.”

The recommendation being made is that this funding formula should be more detailed. Instead of just focusing on those in economic and social need, the formula should specifically account for distinct populations that have been identified as having the greatest needs. In this context, the groups emphasized are older LGBTQI+ adults and PWH.

The idea is to ensure that the funding formula isn’t generic or one-size-fits-all. By requiring the formula to consider the unique needs of each population, it becomes more culturally and socially attuned. We further (and strongly) suggest that all the details and assumptions behind this formula should be documented and made transparent, especially regarding where the data came from and how it was used. This transparency ensures that the approach to funding is based on clear reasoning and is adaptable to the specific needs of vulnerable populations, reducing the risk of any group being underserved. 

And while data tools, like the Social Vulnerability Index (SVI), can be a valuable resource for understanding and addressing social disparities, there are some patient advocacy concerns associated with reliance only on vulnerability scores:

Inadequate representation: Reliance on census tract data and various socioeconomic factors to assess vulnerability alone may not capture the full complexity and diversity of populations within a given area. Certain subpopulations, such as ethnic or racial minorities, immigrants, or marginalized communities, may be underrepresented or overlooked in the some (static) analyses. As a result, their specific needs and vulnerabilities may not be adequately addressed.

Limited focus on healthcare access: Data variables related only to socioeconomic status may not fully capture all unmet medical needs or hidden healthcare-related vulnerabilities. Factors such as health insurance coverage, access to healthcare facilities, availability of primary care providers, or health literacy may not be explicitly incorporated into some SVI data sets. These aspects are crucial for understanding and addressing disparities in healthcare access and quality, which are significant concerns.

Lack of dynamic data. This static nature of some data sets may not also accurately or effectively reflect current social vulnerabilities, especially in rapidly changing communities, like seniors with needs or seniors with HIV. Factors such as gentrification, migration patterns, or economic fluctuations can significantly impact social vulnerabilities, but they may not be captured by what is seen as the best available data. 

Overemphasis on place-based vulnerability: Data that also primarily focuses on geographic areas alone does not always account for individual-level vulnerabilities. It assumes that individuals within a particular area have the same level of vulnerability, which may not be true. Individual characteristics, such as age, disability, chronic conditions, or socioeconomic status, can significantly influence vulnerability, but may not be fully captured by some SVI data sets. We emphasize the importance of considering individual-level vulnerabilities in addition to place-based analysis.

Insufficient consideration of cultural factors: As noted earlier, we must also adequately account for cultural and contextual factors that contribute to vulnerability. Different communities—like seniors or older persons with HIV may have unique cultural beliefs, practices, or access to culturally competent care, which can impact their vulnerability to health risks. We argue that cultural factors should be more explicitly integrated into vulnerability assessments to ensure that interventions and support services are culturally appropriate and effective.

G. Evidence-Based Disease Prevention Models and Health Promotion and Engagement Services

We agree with ACL’s assertion that evidence-based disease prevention and health initiatives enhance the overall health and well-being of older adults, while also reducing the (overall) risks of illness, injuries, and disabilities. 

We also underscore the need for ACL to champion stronger ties between SUAs, AAAs, and HIV service providers, like HealthHIV and the Coalition, concerning these health initiatives, especially considering the challenges facing LGBTQI+ older adults and PWH. To that, ACL should explore the enhancement of strategic partnerships between AAAs and local health entities, state or local health department planning bodies and council (like seen across state HIV HPGs and Ryan White Programs aforementioned) to tackle ongoing and highly-prevalence health disparities and bolster HIV preventive measures, like HIV PrEP and PEP (especially for older adults). 

That said, more collaborative efforts between AAAs (Area Agencies on Aging) and local health departments can bridge the gap between healthcare delivery and community needs, especially in the realms of addressing health disparities and enhancing HIV prevention. Here are five specific areas for such collaborative endeavors:

Integrated Health Screenings: Local health departments and AAAs can work together to organize joint health screening events that focus not only on regular health check-ups for the elderly but also specifically target HIV testing. By integrating these services, they can reach a broader audience and emphasize the importance of whole-person health.

Educational Workshops: Collaboratively design and host workshops where healthcare professionals from local health departments provide knowledge on HIV prevention, the importance of early diagnosis, and available treatments. Simultaneously, AAAs can highlight the unique challenges and needs of the aging population, ensuring that the information is tailored to be most effective for older adults.

Resource Development and Sharing: The two entities can leverage the creations and dissemination efforts of resource materials, such as brochures, videos, or web content, detailing HIV prevention, the significance of early detection, and addressing common myths about HIV/AIDS in the older population. Sharing these resources across both networks can increase reach and impact.

Community Outreach and Advocacy: Together, AAAs and state and local health departments/jurisdictions together with the often person-first respective planning bodies and councils (aforementioned) can engage in community outreach initiatives, such as town halls or informational sessions that build on baseline understandings. By collaborating, they can ensure a comprehensive approach that addresses both the specific needs of older adults and the broader community’s health challenges, including HIV prevention.

Data Collection and Analysis: By further integrating real-world data sets on older adults’ health trends (like that seen in HealthHIV’s Third Annual State of Aging with HIV™ National Survey or other State Of or Landscape Surveys), and actual service utilization, AAAs with state and local health departments/jurisdictions and their respective planning bodies and councils aforementioned can derive insights that might be less apparent when these datasets are viewed in isolation. Joint analysis can more effectively inform both entities about gaps in services, areas of concern in specific communities, and potential strategies or leveraged resource allocations to enhance care and prevention efforts.

Future Considerations in Rulemaking

We are disappointed with the insufficient non-discrimination and cultural and linguistic competency standards in the NPRM. 

HealthHIV houses an internal Research and Evaluation function unique to HIV nonprofits and conducts primary data to guide and enhance core capabilities and conduct continuous quality improvement across its various national and state programming efforts. HealthHIV, HealthHCV, and the National Coalition for LGBTQ Health conduct “State Of” surveys addressing HIV care, HCV care, LGBTQ healthcare, and aging with HIV. Our “State Of” surveys provide unique insight into patient and provider issues in order to optimize primary and support services for diverse communities. 

These annual landscape reports offer the ability to study multi-year trend analyses illustrating changes, challenges, and opportunities to address the needs of providers and patients. 

The National Coalition for LGBTQ Health administered the Inaugural State of LGBTQ Health National Survey™ to identify the unique primary and supportive healthcare needs of LGBTQI+ people. The goal of this survey was to better inform ongoing advocacy, education, research, and training activities. The results provided insight into patient and provider pathways that optimize primary and support services for these communities. To identify the healthcare needs, the Coalition surveyed providers (clinical and non-clinical) across the United States. 

A total of 2,344 provider participants responded to questions at the intersection of clinical and behavioral health, stigma, and social justice. Questions further examined the syndemics of STIs and HIV, housing and homelessness, poverty, systemic gaps across racial and ethnic minorities, as well as on LGBTQI+ specific services impacted during COVID-19.

Respondents reported that two key areas of focus for policy and advocacy efforts are healthcare access and coverage issues as these serve as key inflection points for the health of many LGBTQ people. This is especially true as whole generations of LGBTQ individuals age into Medicare eligibility and the poverty gap widens for these communities. 

And according to providers, the top three health advocacy and policy issues were ranked: LGBTQ Equality/Non-Discrimination Protections (43%); Transgender/Gender Affirming Care (40%); Racial/Ethnic Discrimination: Federal and State (40%). As such, LGBTQI+ older adults and those with older and aging PWH face healthcare discrimination, emphasizing the need for non-discriminatory OAA services. While current OAA regulations have some protections, they don’t fully address the nuanced challenges faced by these vulnerable groups. We urge the ACL to enhance non-discrimination protections. 

State aging plans should further and more explicitly ban discrimination in OAA grants, encompassing race, disability, age, religion, sexual orientation, gender identity, and other markers indicating significant social need. These plans should also ensure that acts like denial of services based on protected characteristics and refusal to acknowledge preferred names or pronouns are considered discriminatory. 

Some states have already incorporated comprehensive non-discrimination terms, proving its feasibility. Though ACL’s proposal to enforce policies promoting fairness and inclusion is commendable, it’s insufficient. We propose that every contract or commercial relationship involving OAA-funded services must incorporate robust non-discrimination protections, ensuring consistent service quality across the board.

We also strongly urge the ACL to adopt explicit references to LGBTQI+ American Indian and Native Hawaiian older adults, Two-Spirit older adults, and American Indian and Native Hawaiian PWH. 

This specific recognition is crucial in all non-discrimination provisions and cultural competency training requirements to ensure these distinct groups receive the acknowledgment, protection, and tailored support that they deserve. 

Finally, we urge the ACL to incorporate a mandate for the State Long-Term Care Ombudsman to systematically track complaints from long-term care facility residents, specifically those pertaining to discrimination based on sexual orientation, gender identity, or HIV status.

By integrating this data analysis into annual reporting systems, the ACL can more effectively root-out systemic discrimination issues and devise remedial strategies.

We also recommend that all personnel affiliated with the Office of Long-Term Care Ombudsman Programs undergo regular training that emphasizes non-discrimination, cultural competence, linguistic appropriateness and confidentially delivered services. 

Given that some states already mandate LGBTQI+ training for long-term care facilities, it’s essential for the Ombudsman’s office, which investigates facility complaints, to be well-versed in the unique challenges faced by marginalized groups, including LGBTQI+ seniors and older and aging PWH.

To ensure the success of such training programs, the ACL should provide thorough technical support. That said, collaborative efforts yield more comprehensive and effective training programs because they combine the experiences and insights of multiple groups. As such, the ACL should offer guidance, resources, and tools. 

Technical support should also include proactively updated training materials, best practices, and subject-matter or person-first expert trainers. 

The trainings should be rooted in (or based on) the principles and rights set out in this Nursing Home Reform Act of 1987. This safeguards that the staff of the Ombudsman’s office understands and respects the rights of: dignity, choice, and self-determination when addressing complaints or issues in long-term care facilities. 

With special focus on populations with heightened social needs, this training also shouldn’t be generic. Instead, it should emphasize or give particular attention to groups that face more significant challenges or vulnerabilities, like LGBTQI+ seniors or PWH. The idea is that these populations often have unique needs or face specific forms of discrimination that staff should be aware of and trained to handle appropriately.

Closing

We appreciate the opportunity to share our insights, particularly as they pertain to the LGBTQI+ older adults and individuals living and aging with HIV/AIDS, whom we represent and champion. We are hopeful for the timely adoption of the Proposed Rule, with due consideration given to our suggested modifications and improvements. 

Should you have any queries or require clarification, please contact us.

Scott D Bertani, MNM, PgMP (He/Him)

Director of Advocacy

National Coalition for LGBTQ Health Lead

[email protected] | HealthHIV.org 

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